Happy Holidays to You - December 2022

Message from the PHO President

THANK YOU to all who participated in the 8th Annual PROMIS International Conference in Prague, Czech Republic! Your active participation made it a success. 

There is still time to make a year-end donation to the PHO. I donate to the PHO because it is the one organization dedicated to advancing the "PROMIS solution" to meaningful inclusion of the patient voice in healthcare research and clinical practice. If PROMIS has a role in your career, consider a donation to the PHO. Gifts of any size make a difference.  

Mark your calendar now for the 9th Annual PROMIS International Conference, October 22-24, 2023 in the Canadian resort mountain town of Banff outside of Calgary. Juhee Cho, PhD from Samsung Medical Center, Seoul, Korea and Eric Makhni, MD, MBA from Henry Ford Health System, Detroit, Michigan will serve as program chairs. After the ISOQOL conference in Calgary, get on the bus with PHO to Banff. 
Dave Cella, PhD, PHO President

'Tis the season for giving
Give Back...By Giving Forward

Why Donate?

"My husband and I donate to the PHO because we know the money goes to support scholarships for young clinicians, researchers, and students, who are working hard to advance the value and use of PROMIS for patients. As a clinician, I use PROMIS assessments every day in my clinics and investing in the PROMIS future and giving back financially is the right thing to do."
Judy Baumhauer, MD, MPH, University of Rochester

"I donate to the PHO because I'm so grateful for the spirit of generosity, inclusiveness, and shared learning at meetings and educational activities. The colleagues and partnerships I have developed with PROMIS partners around the globe have been incredibly important and rewarding. Donating is an easy way to pay it forward."
 Susan Bartlett, PhD, McGill University 

 Click to donate 
Thank you
The PHO is a 501(c)(3) organization. Your donation is tax deductible.
2022 Conference Recordings - Catch the Replay
The 8th PROMIS International Conference

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Save the Dates for PHO 2023
October 22-24, 2023
Banff, Canada
Plan now for the 2023 PHO Conference in Banff in the Canadian Rocky Mountains outside of Calgary. 

The 9th Annual PROMIS International Conference
Driving innovation in patient-centered design:
powered by PROMIS
Chairs:  Juhee Cho, PhD and Eric Makni, MD, MBA
Join Us!  
Be part of the PHO's collaborative international communityGlobe
The PHO is a collaborative and supportive international  organization of researchers, clinicians, and other healthcare professionals. PHO members work in universities, health systems, government, the pharmaceutical and technology fields, and business entities that contribute to patient-centered care.

The diversity of the PHO membership is its strength. The recent PROMIS International Conference in Prague featured a broad spectrum of presentations on PROMIS research and clinical applications from around the world.  Make connections. Find collaborators for your research project. 

Learn more 
New Publications

Stratton C, Tyrrell J, Goren R, et al. The "STOP Pain" Questionnaire: using the Plan-Do-Study-Act model to implement a patient-family preferences-informed questionnaire into a pediatric transitional pain clinic. J Patient Rep Outcomes. 2022 Nov 29;6(1):120. doi: 10.1186/s41687-022-00520-4. 
The authors used the Plan-Do-Study-Act model to adapt a pain questionnaire used in a registry for implementation in the pediatric transitional pain setting. The questionnaire included PROMIS Pediatric Pain Intensity as well as PROMIS Pediatric and Parent Proxy Sleep Disturbance, Pain Interference, Anxiety, and Depressive Symptoms, other non-PROMIS questionnaires, and open-ended questions. Patient and family feedback was solicited via a voluntary post-questionnaire survey, and modifications were iteratively made to customize the experience and reduce ethical concerns, such as irrelevant, sensitive questions. There were no statistically-significant differences in satisfaction between the versions, and the fourth version was adopted as it incorporated the most feedback. This paper highlights a quality improvement methodology that can be used to incorporate patient feedback into PROM implementation and balance customization with standardization.
Tang X, Schalet BD, Janulis P, et al. Can a linking crosswalk table be applied to a different population? An independent validation study for a crosswalk between BSI depression and PROMIS depression scales. PLoS One. 2022 Nov 28;17(11):e0278232. doi: 10.1371/journal.pone.0278232.
Linking scores on different PROMs is valuable to aggregate and compare outcomes. The authors examined whether a linking relationship between PROMIS Depression and the Brief Symptom Inventory Depression subscale that was established in one cohort is valid in another cohort. Both cohorts were men who have sex with men but had different demographic characteristics. The authors completed a linking analysis using the methods from the original study and compared the original and new slope and threshold parameters. There were some differences in item parameters between the two cohorts. However, comparing the crosswalk tables identified only minimal variation and the ability to recover PROMIS T-scores in the new cohort using the original crosswalk with minimal linking bias. The methodology in this paper can be used for external validation of crosswalks in new populations.

Terwee CB, Roorda LD. Country-specific reference values for PROMIS® pain, physical function and participation measures compared to US reference values. Ann Med. 2023 Dec;55(1):1-11. doi: 10.1080/07853890.2022.2149849.
The authors calculated general population reference values in a nationally representative Dutch sample for PROMIS Physical Function, Pain Interference, Pain Behavior, Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities. Patients completed item banks (different domains used in different study waves) and self-reported their health on a single item per domain. The authors calculated T-scores and anchor-based and distribution-based thresholds for mild, moderate, and severe symptoms/dysfunction. Differential item functioning was found for two Physical Function items and two Pain Behavior items, but with a negligible effect on the total score. Mean T-scores for Physical Function and Ability to Participate in Social Roles and Activities were similar to the US means (< 1-point difference), but the other domains had greater between-country mean differences, supporting the need for country-specific reference values. Distribution-based thresholds were similar to the US population for all domains except Pain Interference. However, participants reported limitations at lower severity levels with anchor-based thresholds than with the distribution-based approach. 


Caroline Terwee, PhD presented her inaugural lecture on December 7 at the VU University of Amsterdam to celebrate her appointment as Professor of Outcome Measurement in Healthcare. The title of her presentation was "Outcome measurement in healthcare: standardize to personalize." 

Dr. Terwee aims to facilitate and encourage large-scale use of PROMIS as the preferred system for measuring PROs across patient populations in research and healthcare. She is a past president of the PROMIS Health Organization (PHO) and serves as the PHO representative of the PROMIS National Center (PNC) in the Netherlands.
PROMIS Resources
The PHO works in partnership with HealthMeasures. For more information on PROMIS and to access the measures, visit

Translate Patient-Reported Outcome Measure Scores to PROMIS Scores

The PROsetta Stone project developed mathematical links between commonly used patient-reported outcome measures and PROMIS scores. This work takes a major step toward establishing the relationships between measures of similar concepts. Linked measures include FACT/FACIT, GAD-7, HOOS/KOOS, ODI, PHQ-9, SF-36, and many others. Linking tables, publications, and more information is available on the PROsetta Stone website.

PROMIS Translations Availability

The availability of PROMIS translations is regularly reported here on Currently, there are 2,800 PROMIS translations available,including 45 new measures translated within the past month. Many others are in-progress and will become available in the next 6 months. If you are looking for a measure in a language that is not yet listed, please contact for additional information on translation status or permission to translate.
Invite a Colleague to Join
Members are researchers, clinicians, health policy experts, health system administrators, technology and pharmaceutical representatives, and government. 

Membership benefits include:
  • Discount registration for the PROMIS International Conference
  • Discount registration for the PROMIS Training  Workshop 
  • PHO e-News for updates on activities and opportunities for engagement
  • Free registration for PHO webinars and access to recorded webinars
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  • INFO HUB - Login for free access to recorded webinars, the member directory, update your profile, add your photo, contact colleagues.
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Have you paid your 2022 dues?  Now is the time.

Membership dues are purposely kept low to encourage participation.
News to share? Questions?  Feedback?  Contact Us!

Executive Director - Lousanne "Zan" Lofgren

Meetings and Events - Karen Stenmark

Membership and Registration - Dianne Gilsenan

Corporate Support - Deb Whalen
Why am I receiving this newsletter?
You are receiving this newsletter because you belong to the HealthMeasures (PROMIS, Neuro-QoL, ASCQ-Me, and NIH Toolbox) community. HealthMeasures and the PROMIS Health Organization work as partners to provide education on patient-reported outcomes and to advance measurement science. HealthMeasures operates under a cost-recovery business model with no profit motivation. The PROMIS Health Organization is a 501(c)3 non-profit organization. To discontinue receiving emails from the PROMIS Health Organization, please use the "unsubscribe from this list" link below. 
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PHO e-News, December 2022 

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